The tale of: a parasite infection of my body and brain; how "friends," family, and medical professionals helped contribute to it largely destroying my life; and (reflections on) what I've done and has happened to me since then.

Sunday, February 27, 2011

“At a recent evening lecture at the California Institute of Technology, a neurologist was explaining the ins and outs of new brain-imaging technology to an audience composed of Caltech professors, students, and members of the general public. The audience was rather quiet, lulled by the technical tone of the lecture. But when the neurologist mentioned in passing that the disease afflicting one of his patients was caused by a brain parasite, the whole room sat up and made a collective noise of disgust and alarm. Brain parasites!”

Yup, brain parasites. They do, indeed, exist. Unfortunately, too many of the people I’ve turned to for help have not been willing to believe that. They've made "a collective noise of disgust and alarm," too, but have done so while concluding I must have lost my marbles.

Hundreds of thousands of cases of brain parasite infection have been diagnosed, literature available online about neurocysticercosis is extensive, and numerous stories of specific cases can be found in articles available online (see, for example, “The Headache that Wouldn’t Go Away”) and on episodes of Animal Planet’s “Monsters Inside Me”). Yet…

While all cases are different…

"Neurocysticercosis is pleomorphic in its presentation due to individual differences in the number, size, and location of the parasites, as well as differences in the severity of the host's immune reaction to the parasite." (from "Cysticercosis")

… it is interesting to compare my case with the case of a friend of mine -- yes, someone I actually know and is a professor -- who lives and works here in the San Francisco Bay Area, and has for many years (as I have).

Where and when did my friend ingest the eggs of the pork tapeworm? He will never know, though his hunch is that it happened when he was traveling in developing countries where neurocysticercosis is common. (Where and when did I ingest the eggs of the pork tapeworm? I will never know, though since I, too, have traveled in developing countries where neurocysticercosis is common…) It is possible it happened to both of us right here in the San Francisco Bay Area.

So, there is an example of a confirmed case of neurocysticercosis that occurred right here in the San Francisco Bay Area -- a case that didn't go quite as well as it could have, but compared to mine... And I've learned that his is not the only confirmed case in the area. So, why has it been outrageous for some to even consider that my case is another example?

And as for my claims of criminal abuse in a hospital in Seattle… Impossible to believe, right? No such thing could still be occurring in this day and age, certainly not in the United States, right?

One would hope such cases were anomalies. However, the words of one patient about staff where she was hospitalized suggest that may not be the case (see "Inside closed doors of mental hospitals"):

“The worst part is they know almost nobody would believe you or take you seriously if you told anyone about what they did to you..”

I hope it is obvious that I’m not a happy camper about what has been done to me. The fact that I’ve authored this blog should, alone, be ample evidence of that.

---
Note that my friend who was diagnosed with neurocysticercosis recommends that I go to Mexico in order to have my malady diagnosed and treated accurately. Should taking such an extreme step be necessary?

Tuesday, February 15, 2011

As I’ve documented, finding myself in a position in which I could not effectively determine or contribute to the determination of the healthcare I was to receive proved disastrous.But even after I had recovered some of that ability, I found there to be severe obstacles.

“The way we usually think about health today is bound up in the language of our healthcare system.We call individuals ‘patients.’We call physicians healthcare ‘professionals’ (HCPs). Professionals ‘care for’ patients – by observing symptoms, diagnosing diseases, and proposing therapies. Their proposals are not just suggestions; they are prescriptions or literally ‘physician orders.” Patients who don’t take their medicine are not ‘in compliance.’

In the relationship between HCPs and patients, HCPs dominate.HCPs do whatever is necessary, with patients playing a relatively passive role.In some ways, the system reduces patients to the status of children – simply receiving treatment.”

Indeed, my experience has been that the doctors consider themselves to be the experts, and any input I provide is largely ignored, even when the doctors’ assertions are clearly wrong and perhaps particularly when I reveal that my input is based on research I had done on the internet.What a shame that medical professionals are so closed to well-researched input and to learning from patients, and are unaware of the high quality medical literature that is now available online.

Another obstacle involves the need to get a referral to a specialist from a general practitioner.If the general practitioner isn’t convinced of the need, there is nothing that can be done.Going directly to specialists is, sadly, not permitted in our healthcare system.

“Conventional medical practice in the United States largely ignores the possibility of parasitic disease. There are several reasons for this:

When a disease is never diagnosed it is easy to assume that it does not exist. Parasites are often overlooked in the U.S.

There is a shortage of technicians who are skilled in identifying parasitic organisms.

Spending one’s day studying microscopic sample of stool specimens probably does not attract many laboratory personnel.

There is a common misconception that parasitic problems are primarily found in tropical countries and are rare in countries like the U.S.A.”

Yet, I’ve held out hope that I could find a competent, practicing parasitologist and/or either a neurologist or radiologist with real parasite infection expertise in the San Francisco Bay Area. As part of my search, I contacted the author -- a retired doctor -- of the above article.Unfortunately, this was his response:

“Unfortunately there are very few parasite experts in the USA. The thinking is there are no parasitic problems in the USA as it is not a tropical nation.”

Since “very few” is greater than none, I pushed him for at least one name.His response:

“I do not know who is honest and can be trusted in the field of parasitology and who is not reputable. This information is not easy to come by.”

A couple of especially kind readers of this blog have done some research for me and have pointed me to some people in the U.S. who are likely to know of such specialists.Thus far, I’ve gotten no responses to my subsequent queries.However, I do know of a parasitologist in the Bay Area who treated a friend of mine – also living in the Bay Area -- whose brain surgery to remove a tumor resulted in the discovery of a pork tapeworm cyst instead.Unfortunately, my friend tells me he was unimpressed with this doctor (I hope to find out why soon).So, should YOU have any pointers that might help me in my quest, please contact me via email or a response via comment to this blog posting.My thanks in advance for your help.

Of course, even finding such a specialist does me no good without the referral of a general practitioner (see second obstacle described above).And then there are the fees.However, …

A doctor I’ve been seeing who provides free services via Healthy San Francisco, San Francisco’s mostly free medical plan, has thrown test after test at my ailments, all revealing nothing but more problems.None of the tests have had anything to do with parasite infection, about which he admits to knowing nothing.So, might he refer me to a parasitologist or even to a more general “infectious disease specialist”?Well, he can’t, because there is no such specialist in the San Francisco General hospital system associated with Healthy San Francisco, and any referral outside of this system would need to be approved by the Board, which he claims will deny any such request.

Saturday, February 12, 2011

Given that being in a huge financial hole is one of the obstacles I now inappropriately face (see "Just how much had I escaped?"), I’ve moved my home onto "the street” and have been living there for the past 2 months.Let me introduce you to my new home.

The most important part of my new home is my car (pictured), which includes my bed (the driver’s side seat laid flat), a pantry (on the floor of the front passenger seat), a dining room (the entire front seat), an education and entertainment center (the radio and the car windows), a medicine cabinet and a desk of sorts (the backseat), and a clothes closet (the trunk).If only I had known this nightmare would happen to me, I would have bought a van instead of a hatchback!

My primary dining room has become that which is provided by St. Vincent de Paul in San Rafael, where the food, environment, and treatment of diners are quite impressive, consistent with what one might expect in upscale Marin County.Occasionally, I’ll dine at St. Anthony’s in San Francisco’s Tenderloin district, where the food, environment, and treatment of diners are considerably less desirable, perhaps in part because they serve so many more people than in Marin.

My shower and laundry room are at the Ritter Center in San Rafael.(Again, comparable facilities in San Francisco are less desirable.) I was interviewed and photographed (see to the left) inside the Ritter Center recently by a journalist doing a story on the day an attempt was made to count Marin’s homeless.

I have multiple bathrooms in my new home, but the one appearing in the photo to the right is the most important.Not the cleanliest of bathrooms, it is located in my living room along San Francisco Bay and is open 24 hours a day (though the area is supposed to be vacated between the hours of 10pm and 6am). If only they'd move it 6 more inches away from the curb, it wouldn't flood when it rains!

I’ve come to have two offices, one in San Francisco that opens before 6am each day (a Starbucks), and one in Marin -- the Mill Valley library -- which is perhaps the quietest office one could have.The latter served as an extension of my office before this nightmare began, so it is great to be able to resume my use of it.

The view from the picture window of my new living room? See photo at left for part of that view. Not too shabby, but...

What has surprised me is how easily I’ve been able to adapt to this kind of living.Areas I tended to avoid or at least felt uncomfortable in in the past – areas in which you’ll find lots of homeless people -- have now become part of my everyday home.And I’ve encountered much more warmth and support in such areas than I could have ever imagined. Yet, experiences with a lot of the people who provide services received by the homeless leave much to be desired, arguing that more work along the lines of that being done by students of the Austin Center for Design is badly needed.

Now, I don’t recommend this way of living.In fact, spending the night in one’s car is illegal here.However, helpful words of advice can be found online (see, for example, “Where to Sleep in a Car”).

Not surprisingly, the biggest expenses of my new home are car expenses -- gasoline, car maintenance, etc. Unfortunately, two of the biggest expenses of this nature have been parking tickets and jumping (and also replacing) the car battery (which gets sapped by my extensive use of the car radio).However, the biggest challenge to this way of living lies in my incontinence, perhaps the one health problem I have that most drains my dignity; getting out of the car or driving the car fast enough to deal with this problem poses many challenges daily.

Friday, February 11, 2011

I urinated in my pants twice before they turned off the seatbelt sign on my flight to SFO, but I had just escaped hell, so this nasty physical problem which had developed while I was in Seattle didn’t phase me.I was elated.I badly wanted my life back.My attention turned forward.

One of the first things I did after I returned was go to see a movie.Seeing wonderful foreign and independent movies had been an important part of my life in the San Francisco Bay Area before my nightmare started, and I had come to think I’d never see the inside of a movie theater again.So, I went to a fabulous movie called, “Paris,” featuring the wonderful Juliette Binoche and my favorite city in the world.Interestingly, the movie focused largely on the relationship between a sister and her ill brother.If only my sister had decided to be good to me as the character Juliette portrayed was to her brother…

I also spent a lot of time watching videos via YouTube and other sites to reconnect with other things I valued so much.Episodes of Inside the Actors Studio and the Colbert Report, the movies After Sunrise and Before Sunset, and the music of Elvis Costello, Cecilia Bartoli, and Paul McCartney comprised my starter set.This watching and listening seemed to reawaken portions of my brain that had been lost to me.

And I quickly contacted Jon Kolko to leap back into the performance of my duties as co-Editor-in-Chief of interactions magazine.There was much to do, and I was thrilled to be able to dive in.Related to this, I dove back into reading blogs and resumed my own blogging and tweeting.I also accepted an invitation to moderate a panel at CHI 2010.

While my friend housed and fed me for 2 weeks, I looked for temporary housing, speeding around the Bay Area with two extra pairs of pants in my car.(The extra pairs of pants proved to be essential.)However, before I rented anything, the reality of my situation finally occurred to me.I was in a financial hole made very deep by two forced and inappropriate hospitalizations.There was little to nothing out there that I could afford, and it wasn’t long before I was receiving numerous phone calls about my need to pay bills.

Just how much of the nightmare I had experienced had I truly escaped?

I learned of two appealing job opportunities that I quickly applied for, but as I heard that news was being spread that I had been treated for depression, I realized that securing a job was going to be challenging.Of even greater concern was the possibility that information about my second forced hospital stay and my sister’s false police report could be learned via a simple background check.

More troublesome was that I was soon to be reminded of how much easier it was for people to believe I had mental problems than to believe my brain and body could have been invaded by parasites.An intense, electric-like tingling that rose from your left foot up into your head over a period of days?Wild seizures that tossed your body all over the place?A false police report filed by your own sister who seemed so nice on the phone?Criminal abuse in a hospital in Seattle?“Seems mighty unlikely, Richard; sure you didn’t really go insane, even making anything your sister might have done justified?”

And to top things off, my health started to decline again, starting with the painful, multi-colored swelling of my left foot and leg.At least this could be clearly seen by others as a physical problem!

So, I resumed my own investigations, first by returning to the two Bay Area hospitals in which I had been a patient in order to pick up copies of the CT scans of my brain.And I dug further into the medical literature online about parasitic infections.And what did I find?First of all, on the CT scans, I found a couple of “bright circle(s) of white, the size of a dime,” as the appearance of “tiny worm(s), the larvae, the young offspring of a tapeworm” are described in a recent New York Times article.The bright circles (an example from my brain appears nearby) matched descriptions of parasitic cysts found in the online medical literature and described by a neurologist as well.And all the symptoms I had experienced matched descriptions in the medical literature of symptoms of either neurocysticercosis or cysticercosis.

Then an amazing piece of evidence surfaced, courtesy of the gastric reflux I had begun to experience several times each day.A worm came up out of my digestive system, then into and out of either my mouth or nose (I know not which, as this bout of gastric reflux caused a lot of coughing).It was a flatworm, coiled and wiggling.Unfortunately, as I stood stunned at what had just happened, the worm tumbled down into the drain of the bathroom sink.I nearly cried as I lost what could have easily been used to diagnose my nasty health problems once and for all.

Until this time, my parasite infection diagnosis was only tentative. Now it seemed to be nothing but a certainty.Short of having had my early epileptic-like seizures witnessed by others and my being taken to an appropriate doctor instead of a psychiatrist, proper analysis of the CT scans would have prevented the most devastating portions of my nightmare.

At the time of my discoveries, I was spending nights on the sofa of a former girlfriend. And during this time, my seizures returned, though they were not nearly as wild as before.My legs would flail for several minutes; large portions of my body would suddenly jolt; waves of numbness would sweep over me.On top of this, sharp pain began to eminate from my muscles, particularly those of my left arm, and I started experiencing pangs of pain in my head.Blood began appearing in my urine and stool every so often.My hair started falling out. A sticky, grainy substance started oozing from around my eyes, such that should I close them for even as few as 15 minutes, my eyes would be as if glued shut.

My symptoms frightened a new GP I began to see, and tests she ordered revealed only more problems, including “degeneration” of portions of my spine and some sort of nodule on my lung.I proposed that everything could be explained by a parasite infection, but she argued to the contrary based on the combination of the results of a blood test and her belief that a parasite infection could only be localized (a false belief).

An MRI of my brain revealed that the cysts were no longer there, and analysis of one of the “bright circles of white” on one of my earlier CT scans led to the conclusion that it was only something that had become calcified.As described in the online literature (as in, for example, "Brain Worms and Brain Amoebas: They Do Exist"), once the immune system response to cysts gains strength – a response which in and of itself often causes seizures – “the cysts are replaced by scar tissue and finally by calcium deposits,” both of which can also cause seizures.Once again, the ignorance of U.S. medical personnel about neurocysticercosis that I referenced in “What is (neuro)cysticercosis?” inhibits a proper diagnosis.My provision of copies of articles from the internet were dismissed, as if they were an insult.

As I failed to make progress with the medical personnel, the willingness of my ex-girlfriend to let me continue to sleep on her sofa declined.And she continually informed me of this in considerably less than pleasant ways, due, in part, to baggage from our failed romantic relationship.

And my health declined even further.My heart would labor at least once a day.My spine would often get soaked in sweat as it “degenerated” further, and I’d sometimes have difficulty holding my head upright.My left arm was in almost constant pain, and I could move it only slightly.Some days I could barely speak, let alone remember what I said or thought only a few moments before.On a few occasions, a portion of my vision just vanished. And as before, I felt like portions of my body were being eaten.

I didn’t know what I could do, as I believed I had exhausted all options available to me.So, I just largely gave up and withdrew, spending the greatest part of each day in my car.When I decided to reach out to some people who did not know why I had vanished, my phone calls were not returned; instead, people turned for answers from the “friends” who contributed greatly to my nightmare.

Then I stumbled on the fact that I could order from India one of the drugs they had prescribed for me in Seattle.It was not one of the two drugs usually prescribed to sufferers of neurocysticercosis to kill the parasites.However, something given to me in Seattle had conquered my seizures and other symptoms for awhile, so I decided to give the drug a try, encouraged by my finding in "Brain Parasites" that:

“…a lot of modern day medicine prescribed for Mental Health … is anti-parasitic by nature when you break it down in Medical Engineering principles. However, it is not marketed, and relatively unknown unless you look at the manufacturing and molecular structure of certain treatments.

Seems interesting that some Medications used in Psychiatry have similar molecular structure to Anti-Parasitic herbs or compounds discovered previously in nature or science...”

Happily, the drug helped.The seizures diminished, my spine stopped sweating, my ability to think and speak improved, etc.So, I decided to try to reach out once more, to let people know what had happened and was happening to me.And after sending a couple of long emails to a few people about just that, I decided to tell the whole story via a blog, which is what you are reading now.

My health is far from perfect.“You are a wreck,” proclaimed a friend. However …

Wednesday, February 9, 2011

The nightmare in my sister’s home was ending, but I figured her false police report would follow me to San Francisco. So, I decided to prevent that from happening – I didn’t get on the plane that would have taken me to SFO. Instead, I had the airline folks retrieve my luggage from the plane, and I took a taxi to a nearby hotel. I checked in, bought a Coke from a vending machine, and had yet another lengthy wild seizure while I tried to get some sleep.

The next day, I began my entrance into hell as I was taken to a psychiatric ward courtesy of my sister, my “friends” in San Francisco, and a judge. After my arrival, the admitting physician crudely tossed my copy of the admission papers onto my gurny and told the guard to not be concerned if the papers were to get lost, as I would not be getting out.The guard read my sister’s police report, said I must have been tased by police several times, and handcuffed me to the gurny. I did not expect my sister could lie in such a way as to warrant such a reaction. I was becoming very scared.

On the ward, my psychiatric team was highly professional and supportive. However, I listened as members of the nursing staff gasped while reading my sister’s report, and their treatment of me when the psychiatric team was not around became horrific. The first hint that bad things were going to happen involved a group of four nurses sloppily drawing blood from my hand; throughout the process, blood dripped onto the floor, and they left the needle in my hand – still dripping of blood -- after they were done.

Shortly thereafter, several new “patients” without identifying wrist bands appeared on the ward and would continually walk the oval layout of the floor.At night, they would pound on my door and yell.During the day, they would blend in and go unnoticed by psychiatric teams who focused only on their assigned patients.I overheard some of these fake patients’ discussions of what it was that my sister claimed I had done.

The head nurse on the ward yelled at me often.Twice, he yelled that I was a psychopath, and I overheard him making that claim and quoting my sister’s report to medical personnel scheduled to perform tests ordered by my psychiatric team.The result was that certain tests, including brain and other scans, ordered by my psychiatric team were not done. For scans, I’d be taken at night via wheelchair and wheeled up to the imaging machines which would then be turned on for a few seconds without my being placed within them. Thankfully, claims to the psychiatrists that tests were not being done were greeted with seriousness, and a psychiatric student eventually accompanied me on a couple of tests to make sure they were performed. However, for a lumbar puncture to be performed in my room, the psychiatric student was asked to leave after medical personnel used a small pin to puncture a hole in the skin at the base of my spine to mark the point at which the long needle would normally be inserted; after the student left, the doctors stood around for a few minutes, grabbed some of their equipment, and departed, vials intended for spinal fluid sitting empty on the nightstand.

Throughout this time, I would, as before, have occasional seizures and related symptoms, but all of this quickly became the least of my worries.

One night, a temporary nurse hailing from Alabama (as he often told other nurses) began arriving on the ward very late, and I listened in as plans were hatched to force me to do all sorts of things, many sexual, with other patients and some of the nurses.“I’ve got the maggots for him to eat,” I heard him say to another nurse one night, as he disappeared into the drug room to prepare the drugs I’d be forced to take.(Another nurse accidentally left a typed list of drugs in my room for awhile after delivering an unexpected snack that knocked me to my knees as I was eating it.)Additionally, a scary helicopter ride was in the works (this hospital is well-known for its heliport).I appealed to the nurse to stop the vigilantism.

During evenings of this timespan, several patients complained about excessive doses of prescribed medication intended to help them sleep and about the unusually early hour they’d be required to go to bed.A few patients and some of the fake patients would be led off the ward at 11 to one of the neighboring wards to a room selected for many of the activities planned for me.(A couple of patients in the group who were my informants expressed dismay at what was to happen, but seemed rather happy to have been given the opportunity to participate.)

Twice, I was able to log into the one computer on the floor made available to patients.Both times I posted “in a nightmare” on my Facebook wall.Subsequent attempts at signing into anything were blocked, as the passwords I would enter would be visibly scrambled as I typed them. (I use the same username for almost all of my online accounts.) Clearly, they were well-prepared for abusing a patient.

During this time, I had no prescribed medication as the psychiatrists were unable to determine what was wrong with me.However, I would be drugged in an assortment of ways at night, including via food as mentioned earlier.By 11, I was usually fighting to stay on my feet, and I’d head for the bathroom which seemed to offer the only protection I had. Throughout the rest of the night, nurses would come to my door every 5 to 10 minutes, inviting me to come out into the hallway, enticing me with promises of special snacks and movies or threatening me with promises of penalties. Ice cold air would be pumped into my room to help flush me out. Snide remarks about my every move, caught on camera, were broadcast over the PA system.

Nor surprisingly, I was terrified, but I was committed to fight what was planned for me.And one night, I simply repeated some nasty words one of the nurses said to me to lure me out of the bathroom.To my surprise, she responded as if threatened and stupidly sounded an alarm.Shortly afterward, I heard the group of patients, fake patients, and nurses scurry back onto the ward.The alarm had apparently nearly led to the discovery of their plans.Later, the nurse from Alabama entered my room shaking; this time, it was him who had been frightened.

The next day, a student on my psychiatric team told me that a nurse had been verbally abused the night before, and the abusing patient had been moved into a secluded room off the ward.In fact, it was I who had been the “abusing” patient, and another patient, a meek man also named Richard, had been removed from the ward. Soon afterward, I was moved into a room with a roommate, and the terror was over.

Hearing that I had been spending nights holed up in my bathroom led the psychiatrists to prescribe light medication.To my surprise and delight, seizures and most other symptoms largely stopped, and I became able to eat normally again.And eat I did -- often.The meals there tasted terrible, but I supplemented meals with lots of peanut butter and jelly sandwiches, ice cream, and Graham crackers – the food made available to patients at night.I regained two-thirds of the 50 pounds I had lost.

Finally, the psychiatrists began to speak to me of my release.Earlier I had been told I would likely be transferred to a mental institution elsewhere in the state for the rest of my life.Now, a full release only required that I find a place in which I would be able to stay after I left.Fortunately, a friend in the Bay Area offered to take me in for a short time.

As I was about to be released, one of the nasty nurses on the ward scowled that I had “escaped.”I did not linger when they finally let me out that door.And this time, I got on the plane.

Thursday, February 3, 2011

Following the loss of my home, many of my belongings, and most of my dignity (see "The nightmare worsens even more”), I blacked out as the plane rose from SFO and headed north.

“What is in those boxes that arrived in the mail recently?” asked my sister after my arrival.“Clothing of mine that my friends decided I should keep,” I answered.“But I only offered you a place to stay for a few weeks,” she replied with surprise.Already, my “friend’s” plans for me were beginning to unravel.

As described in previous postings, I was not myself, and my sister was ill-equipped to handle that.Oddly, the fact that she was a nurse prompted no empathy or sympathy for me in my condition.In less than a week, she wanted to send me back to San Francisco.I convinced her to let me stay, but she clearly regretted inviting me to her home.

I remained largely unable to function normally; even simple tasks, like using the microwave or taking a shower, were challenging for me to do. My wild seizures occurred almost daily, some publicly, including my right leg lifting wildly into the air on every step as we walked down the street. Some seizures lasted hours, including a 10-hour stint of my arms flailing uncontrollably. Eating sometimes triggered the start of seizures. Red markings would appear on my skin, only to disappear before our eyes.Words would often come out of my mouth uncontrollably, and it was difficult for me to carry on any sort of normal conversation.I'd get lost walking two blocks to get to my sister's home. My usual elegant handwriting deteriorated to something scraggly and next to unreadable (see example in the image nearby). Use of my hands alone instead of a fork or spoon proved to be a more comfortable way of eating for me. Believers in demonic possession might have concluded that I needed a priest more than any kind of a doctor.

All of this easily disturbed my sister’s life, which was simple, routinized, and solitary. She was embarrassed, and she became frightened.Ultimately, she yelled at me that I was insane.

Throughout this, it felt as if my body was being eaten, and food and drink would sometimes immediately be rejected by my body and would burst out of my mouth.Though I usually wore 3 or 4 sweaters at a time and covered myself with several blankets, and though the Seattle area summer was setting records for high temperatures, I was almost always very cold.I was able to sleep for, at most, only three 15-minute periods each and every night. My hands and body would often shake uncontrollably.I had to dash to the toilet often to avoid peeing in my pants.My weight dropped dramatically.

My sister took me to the neighborhood clinic, but we could never get past the nurse practitioner to see a doctor.Then, one night, I felt as if I had become paralyzed, akin to the dystonic reaction I experienced to an anti-depressant in San Rafael.In the morning, my sister called an ambulance, and we went to an ER.There, another CT scan of my brain was done, and as before, it was declared clear of abnormality.Nevertheless, they referred me to a neurologist, but my sister clearly had had enough of me. (Note that, as before, a later examination of this CT scan revealed the presence of parasitic cysts.)

After I damaged the pocket of a jacket of hers and broke her desk chair during seizures, my sister’s behavior took a menacing turn (though I paid for a new chair and, for some reason, also new scratching posts for her cat and several new items of clothing for her).One day, I noticed that the side of a living room pillow had been slashed open; when I asked her what happened, she yelled at me that the pillow had always been that way (though it clearly hadn’t been).Knives started appearing all over the place, and she served food requiring their use.She would open the door of her home and begin to yell at me for no reason, as if with the sole intent of having her neighbors hear. And she appeared to do things to get my fingerprints onto all sorts of her belongings.

I confronted her about what was happening, and she told me she had to get rid of me somehow.Then one morning, she – who started every morning the same, exact way -- rose early and disappeared outside around the corner of the complex in which she lived.Earlier that morning, I had noticed that a police van had pulled up in the area to which she walked.I sat down and waited for something very bad to happen.A couple of hours later, she returned, only to drive away for the day.And all cars in the parking lot of the complex disappeared.

Shortly thereafter, a police van pulled into the parking lot.Later, kids who lived in the complex could be heard yelling to me to come out of my sister’s home.I stayed inside.Late in the afternoon, for some reason, the police just departed, and residents began to return their cars to the parking lot.I went outside, and the residents stayed inside their cars.

Two days later, my sister took me to my appointment with the neurologist.I expected her to drive me to the police station, but surprisingly, she drove me to the hospital.There, the neurologists interviewed me and agreed on the need for an MRI and lumbar puncture, both of which were scheduled two weeks out.However, before we left the hospital, my sister got angry and canceled the appointment.

Upon our returning to her home, my sister threw my clothing and other belongings into my luggage.She then made an evening flight reservation for me to San Francisco, and she called the folks in San Francisco to announce I would be returning and that I had "misbehaved" in Seattle.The folks – whom I had called a couple of days earlier to reveal what my sister was planning – was very angry, and I was scolded on the phone.

Before we left for the airport, my sister poured some kind of liquid all over her sofa and loveseat.She also did a bit of damage to pretty much everything in her home that I had ever touched.I was confused.Why was she doing this now that I was about to be sent back to San Francisco?

My sister dropped me at the airport, and I waited for the flight to depart.While waiting, my right leg started jumping all over the place, much to the amusement of some others waiting at the gate.I tried to make sense of what was happening, and feared I’d be arrested when I arrived at SFO.

Tuesday, February 1, 2011

As the “friends” I turned to for help began to turn on me (see end of previous posting entitled, “The nightmare worsens”), I started searching the internet for possible explanations for what had been happening to me.New markings on my genitals, my tongue, and my chest prompted me to wonder whether AIDS or syphillis was the culprit, as I discovered photos of markings akin to mine among photos of patients with such STDs.So, I went to be tested for these and other STDs, but all tests were negative.

Then something weird happened.During the day of the final outpatient therapy session I attended, my left foot started tingling intensely.“The extremeties of alcoholics sometimes tingle,” claimed the session leader whom I asked about my foot.Had I become an alcoholic without my realizing it?I had my doubts, though I had been drinking more for the past several weeks than ever before.

Most surprisingly, the tingling started climbing up my left leg.

“Anxiety is almost certainly the cause,” proclaimed the psychiatric head of the out-patient program, “with a heart problem a less likely possibility.”

My GP, who had finally agreed to add me back to his list of patients, suggested Lambert-Eaton Syndrome, a rare autoimmune disease, might be the cause, and he warned me of the possibility of dire consequences should the tingling – a virus – climb into my head.A nerve conduction test from a neurologist dismissed the GP’s suggested diagnosis.

Whatever it was, the intense, seemingly electric tingling continued to rise, and seemed to rise faster at night when I was more relaxed and was lying down.I began to stay upright and to keep a log of what I was experiencing, as I was worried about dire consequences referenced by the GP even though the neurologist rejected his suggestion.A snapshot of one of the logs I made during the wee hours of the morning appears nearby (click on it to see an enlargement).

I told my “friends” of what was happening, but, consistent with their having turned on me, they thought I was imagining it all, though one of them was able to feel the electric-like tingling when touching my tingling ankle.

Around this time, my driving my car became inadvisable.I was unable to “see” all the things I would normally see when driving, plus my head would fall to my chest every few minutes as I drove.I nearly struck multiple pedestrians, and I drove through a couple of stop signs.I’m surprised I didn’t have a major accident.

Also around this time, my friends began to argue the necessity of my moving out of my home and in with my sister -- a nurse -- near Seattle.My sister offered to take me in, and my “friends” thought it unwise for me to continue to live alone given the state I was in.However, I did not want to move in with my sister; I only wanted to find out what was wrong with me.My “friends” were not disuaded and began to toss some of my belongings into boxes and separate things out that they decided should be sold via a yard sale or given to the Salvation Army.I was instructed to finish the task and was given a firm time limit.

One might think I’d have been able to say “no” to all of this, but I could not do so, as I was rendered largely nonfunctional by whatever was affecting my brain.However, I tried to figure out what I could do to buy time.

Meanwhile, over several days, the tingling had continued to climb up my left leg. It eventually reached my groin, where it remained for quite sometime, increasing in intensity.Then one afternoon, it moved up into my chest, and I began to get scared.I decided to drive to Marin General Hospital to sit outside the ER in case something bad happened if it rose into my head.

On the way to Marin General, it rose into my head.I parked the car, and pondered what I should do.Curiously, my right hand and arm moved on their own backwards to the right and into the back seat of my car, ultimately pulling my entire body into the back seat.I was astonished.I got out of my car, walked to the ER door, and stood there for some time wondering what I’d say to the doctors, concerned that my having been a psychiatric out-patient might prompt a second forced stay in a psychiatric ward.I walked back to my car and got back in.Almost immediately, my right hand and arm again moved on their own backwards into the back seat, and then pulled the rest of my body back there with them.I could not believe what was happening to me.The presence of three police officers nearby convinced me to leave to escape detection.I drove home.

After I got home, I went into the basement, and, amazingly, I began to spin rapidly on my feet in circles to the right.The spinning continued until I reached out to grab the washing machine or dryer in order to stop it.I’d then let go, and the rapid spinning would resume.I stopped it again, then tried to experiment to see if the spinning could go to the left.It could not – it would only go to the right.

This might all sound rather scary, but I found that I was not scared by it at all; I was only utterly amazed! Since I don't believe in demonic possession...What concerned me most was that I was sure my friends would think I had truly gone crazy.

After spinning and spinning for a half hour or more, I went upstairs into my home, plopped down on my loveseat, grabbed onto it, and tried to go to sleep. Since I still could not sleep at all, I went to my computer, held onto the chair I was sitting in, and started to search for an explanation.This time I somehow found an article and a video which suggested I was infected by a parasite.

The next day was the day my “friends” decided I’d hold a moving sale. But in the morning,I told them I was not going to leave my home.Not surprisingly, the response was not supportive, so to soften the negative response, I suggested continuing with a sale, but of only fewer things than they had intended. That is what we did, but the extreme tension made the experience of the sale about as unpleasant as it could be.

Then, shortly after the conclusion of the sale, my body plunged onto the ground and rolled backwards to the right several times.I picked myself up and went indoors, where my body plunged onto the floor and resumed rolling, again backward to the right.My awestruck friends grabbed onto me, put me in a car, and took me to the ER.There they did another CT scan of my brain.“All clear,” announced the doctor, who echoed an earlier claim that my symptoms were likely due to anxiety.A few months later, I would learn that this CT scan, as the one I had before, was NOT all clear, but revealed the presence of a parasitic cyst in the center of my brain just above or on my hypothalamus.

Two days later, I was in the office of a neurologist to whom the ER doctor had referred me, and on the office wall was a poster which outlined the four stages of Alzheimer's disease. Interestingly, I found that the description of stage 1 matched some of my new mental limitations exactly. I mentioned this to the neurologist, who just scoffed at my claim. Additionally, without seeing the CT scan, she said an MRI and a lumbar puncture would be in order to better determine whether, indeed, a parasitic infection was responsible for my seizures. However, she proclaimed that that potential cause would be unlikely.

Sadly, I got neither the MRI nor the lumbar puncture, as my friends' plans for my leaving my home moved forward rapidly. Indeed, a few days later, my remaining belongings were either thrown into boxes or given away.My large items of furniture were dismantled hastily, damaging some of the pieces.Then things I would retain were hastily loaded onto a flatbed truck and taken to and haphazardly placed into a storage unit.My home had been destroyed, my life was being destroyed, and I was in no condition to stop any of it.

Throughout this time, I continued to have wild seizure-like experiences, many of which started with me climbing up onto furniture.I could not stop any of this from happening, but I could cushion some of the blow being experienced by my body so that I wasn’t getting too badly bruised.On a couple of occasions, instead of my body rolling all over the place, my arms flailed about uncontrollably, sometimes for a couple of hours.On one occasion, the experience of my right hand and right arm moving back and to the right reoccurred, this time while I was sitting in a branch of Bank of America; it was challenging to make that look like nothing out of the ordinary had happened. I could watch the muscles in my legs pulse rapidly and randomly, and it felt as if my muscles were being eaten. Throughout this time, the tingling continued, including the movement upwards into my head, across the upper-part of my back to the point at the base of my skull that had ached before the tingling ever started.

And the insults from my “friends” continued, as I remained largely nonfunctional and indecisive.I was good at standing or sitting, but not accomplishing anything else. I was pegged as homeless by a cop looking for a criminal in San Francisco and by the ticket taker at the Rafael Film Center (of which I had been a member for years), who shooed me away. Ultimately, my “friends” openly proclaimed that I had become insane and that it was too bad no money existed to find out why this had happened.

Then one evening, I was taken to the airport, where I boarded a plane for Seattle and my sister. In Seattle, things were to get even worse – MUCH worse.